It Happens.

purple ribbon

Today is Thursday July 18, 2019. I would have been off of Plaquenil 15 weeks today. Yes, my friends, you noticed the would have been? It’s been that kind of week.  It’s been that kind of month. I was off of the medicine just long enough to make myself sick.  


So, 3 doctors appointments, one hospital trip and a vein scan later, I have positive lab and I’m symptomatic, so back on the meds I go- taking with me the all familiar Systemic Lupus Erythematosus diagnosis.

I was disappointed. And mad. And scared. Anxious. And really, I couldn’t believe my ears. I was doing so good. It’s been sorta sucky to watch it  fall to pieces around me. Doc had two theories.

  1. The first was that the Plaquenil was causing the dizziness/ balance stuff.
  2.  My disease has progressed past the realm of just Plaquenil.

We took the Plaquenil away long enough for me to become symptomatic again and the balance/dizziness persisted, soooooo numero uno can be ruled out. I have mixed feelings about the second theory. Mainly because while my lab indeed shows disease activity, it’s the lowest it’s ever been and that lab was taken while I was off the medicine. Also, because no one wants to believe that they’re getting sicker instead of better.

Am I right?

Then again, I’m not a Lupus specialist. Nor a doctor.

I’m just a very confused patient.

Anyway, I go to Sanger Heart in August and I have upcoming Neuro appt in September. Maybe they can come up with something before we have to move on to chemo/ cancer type drugs.

I HATE taking medicine.

But, I LOVE living.

So, there’s that.

I’ve missed my little blog. Miss you guys. I hope things will be back to normal soon. I have so much I want to do. So much I want to write and so much on YouTube I want to create. It’s just the worst time ever to be sick. Not that anytime is a good time, but you know what I mean? I want to be creative, I want to create. I feel like I need that as an outlet right now, but my damn body won’t cooperate.

It’ll get better. I hope.

Forever the optimist.





  1. All I can send is good energies your way. Take one day of a time and listen to your body and your instincts. Communicate that to your doctors until they listened.

    I hope you are feeling better and huge virtual hug from Amsterdam

    Liked by 1 person

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